Last night as we were heading to bed Deb commented that I've lost weight - my ribs are visible! So when I went to the clinic today to have my tube flushed I weighed myself. 
 
For some reason I looked at the scale in pounds, rather than kilos:  160lb - which I automatically converted to stones (showing my age a little) - 11 and a half stone.  Wow.  That's exactly the weight I was when I left school 27 years ago.  For the metric minded that's about 72.5 Kilos.  It sounds light to me but the BMI calculator says its smack in the middle of the correct range so I'm not going to argue.  Though I'll start to get concerned if I slim down much more. And for the record, my blood pressure is fine too (110/60 or thereabouts :-)
 
I was 83kg when I had my relapse in July, and almost exactly exactly the same weight when I came out of hospital in October which is pretty surprising. Most people waste away over the course of a transplant but I guess the intravenous stuff they were feeding me just stuck.
 
I've been shedding steadily over the past months as I stopped taking the steroids, lost water, and started exercise again. I always lose weight when I spend a lot of time at home, or on my own because I tend to eat when I'm hungry, rather than just because the clock says it's lunchtime.   Stopping alcohol, junk food, sweet snacks, etc has probably helped too.
 
Interestingly (or not) - I keep forgetting to ask whether I'm allowed to drink alcohol.  Several hospital visits ago the doctor lifted my dietary restrictions, and each time I return I fully intend to ask him whether I'm allowed a celebratory beer, or and occasional healthy glass of red wine. But by the time I get in for my consultation my mind is always full of other thoughts and I forget to raise the question. 
 
On my visit last week the topic I was burning to raise was the result of my bone marrow biopsy.  If you remember that was the 6 month check to see whether any white blood cells with my DNA were floating around, or whether they were 100% donor.  This is a key point because anything less than 100% would mean there is a chance of the leukaemia coming back.
 
And his response? "The laboratory haven't contacted us yet, so that probably means you're OK. They only call us when there's a problem or bad news...."   
 
!   
 
After a little further inquiry it appears that these genetic tests are funded by public donation rather than by the government so they dont have $$$ to waste on admin. I choke.  The quality of the medical care here is great but concepts like empathy, holistic care, treating the whole man, seem to have passed them by. The idea that I might have been worried or anticipating the results seemed completely novel to him...   Breathe. pause . Breathe. Smile.
 
Oh - and the reason I was in last week was that I have a rash around my belly and back.  Could be heat rash, could be mild GVHD. Though GVHD is usually on face, neck, palms, soles, arms - almost anywhere other than the trunk - so we're not sure.  But to be safe they have upped the level of one of the drugs I'm taking, and put me on a very low dose of steroids again (2 pills a day as opposed to the 12 I was on when I left hospital).  I'm almost excited by the change - it reminds me that I really have something to be careful about after a couple of months where I've been getting careless.
 
More next week when I've been back for my follow up.
 
Toot!